Latest posts tagged with #RareBarometer on Bluesky
Child dressed in a mouse costume with a hat and bandana, alongside text about living with rare or undiagnosed conditions and a final call to action.
⏰ Final call! The #RareBarometer survey is closing soon.
If you live with a rare or undiagnosed condition, your experience can make a meaningful difference.
📝Take the survey before 14th of December: http://tiny.cc/RB-MH
Young child in a dark blue dress holding a vintage suitcase, overlapping text 'what can the rare barometer survey achieve'
What helps you live with a rare or undiagnosed condition?
The #RareBarometer survey wants to hear from you.
Our surveys inform policy, shape research, and connect a global rare disease community.
Your voice matters - take the survey today: http://tiny.cc/RB-MH
🦋 #Lupus is a rare autoimmune disease that can potentially impact every aspect of life, from daily activities and social interactions to work and access to support.
✍️ Participate in the #RareBarometer survey by @eurordis.bsky.social
& make your voice heard
www.sphinxonline.com/surveyserver...
📣 Deadline extended!
POV: When you thought you missed the #RareBarometer survey… but it’s now open until 14 December 😮👇
Don’t wait, we want to hear from you!
👉 Take the survey now: http://tiny.cc/RB-MH
Man in blue jacket overlooking icy landscape promoting rare disease experience survey. 'Providing participants valuable insights into their rare disease experience, take our survey'
This #Movember, we’re encouraging more men living with a rare disease to take part in the latest #RareBarometer survey. Men often make up a smaller share of respondents, so hearing from you helps build a fuller picture of life with a rare condition.
👉 http://tiny.cc/RB-MH
5 people sit on stools and laugh as Roseline speaks into a microphone.
🏥 Roseline Favresse also shared findings from the #RareBarometer survey on diagnosis. She noted that access to diagnosis is faster when patients are referred to centres of expertise, underscoring the importance of connecting them through national and European Reference Networks. (6/8)
Jessie speaks behind a lectern at the World Orphan Drug Congress.
🤝 Jessie Dubief then presented our #RareBarometer programme, explaining that these studies enable the creation of evidence-based, patient-centred policies. She demonstrated how industry can partner with patient organisations to help them maximise the impact of their own data. (5/8)
🦋 #Lupus is a rare autoimmune disease that can potentially impact every aspect of life, From daily activities and social interactions to work and access to support.
✍️ Participate in the #RareBarometer survey by EURORDIS & make your voice heard
🔗 www.sphinxonline.com/surveyserver...
On this #worldmentalhealthday, your voice can help shape better support systems & raise awareness of the emotional impact of rare diseases across Europe & beyond. Help us understand what support really matters to you!
🔗 tiny.cc/RB-MH
#RareBarometer #mentalhealthmatters #rarediseasevoices
💬 Don’t miss the chance to make your voice heard! What helps you live with a rare or undiagnosed condition?🌟 Tell us about it in the new @eurordis.bsky.social #RareBarometer survey! Survey available in 25 languages.
👉 Take the survey here: tiny.cc/RB-MH
What's it like living with a rare or undiagnosed condition?
More specifically, how does it make you feel?
This #RareBarometer study - initiated by @eurordis.bsky.social - hopes to provide insights into what supports can help patients & their families manage everyday life.
📊 The latest #RareBarometer survey by @eurordis.bsky.social reveals that 7 in 10 people with rare uro-recto-genital diseases live with disabilities—and many face barriers to work, support & equal participation.
🔗 Read our article for more insights: eurogen-ern.eu/rare-baromet...
📢 New Rare Barometer results:
🔹 8 in 10 with rare or rare kidney diseases live with disabilities
🔹 23% unemployed
🔹 50%+ struggle with support
🔹 57–58% face discrimination
📄 tiny.cc/survey/RB_DailyLife
🌐 eurordis.org/voices
Thanks EURORDIS, Rare Barometer & ePAGs!
#RareBarometer #ERKNet #EURORDIS
